Development, Rasch analysis and validation of the kidney symptom burden questionnaire (KSB-Q)

Derek Kyte; Benjamin R Fletcher; Mike Horton; Sarah Damery; Olalekan Lee Aiyegbusi; Nicola Anderson; Andrew Bissell; Melanie Calvert; Paul Cockwell; James Ferguson; Muirne C S Paap; Chris Sidey-Gibbons; Neil Turner; Rav Verdi; Anita Slade

doi:10.1093/ckj/sfaf112

Development, Rasch analysis and validation of the kidney symptom burden questionnaire (KSB-Q)

Clin Kidney J. 2025 Apr 24;18(5):sfaf112. doi: 10.1093/ckj/sfaf112. eCollection 2025 May.

Authors

Derek Kyte^{1

2}, Benjamin R Fletcher², Mike Horton³, Sarah Damery⁴, Olalekan Lee Aiyegbusi^{2

4

5

6}, Nicola Anderson^{2

4

5}, Andrew Bissell⁷, Melanie Calvert^{2

4

5

6}, Paul Cockwell^{2

8

9}, James Ferguson^{2

5}, Muirne C S Paap¹⁰, Chris Sidey-Gibbons¹¹, Neil Turner¹², Rav Verdi⁷, Anita Slade^{2

5}

Affiliations

¹ Department of Allied Health, School of Health & Wellbeing, University of Worcester, Worcester, UK.
² Centre for Patient-Reported Outcomes Research, Institute for Applied Health Research, University of Birmingham, Birmingham, UK.
³ Leeds Psychometric Laboratory for Health Sciences, University of Leeds, Leeds, UK.
⁴ National Institute for Health and Care Research Applied Research Collaboration West Midlands, University of Birmingham, Birmingham, UK.
⁵ National Institute for Health and Care Research Birmingham Biomedical Research Centre, University of Birmingham, Birmingham, UK.
⁶ National Institute for Health and Care Research Blood and Transplant Research Unit in Precision and Cellular Therapeutics.
⁷ Kidney Patient Advisory Group, Centre for Patient-Reported Outcomes Research, Institute for Applied Health Research, University of Birmingham, Birmingham, UK.
⁸ Department of Renal Medicine, Queen Elizabeth Hospital Birmingham, University Hospitals Birmingham, Birmingham, UK.
⁹ Institute of Inflammation and Ageing, University of Birmingham, Birmingham, UK.
¹⁰ Department of Child and Family Welfare, Faculty of Behavioural and Social Sciences, University of Groningen, Groningen, The Netherlands.
¹¹ MD Anderson Center for INSPiRED Cancer Care, University of Texas, TX, USA.
¹² Centre for Inflammation Research, University of Edinburgh, Edinburgh, UK.

Abstract

Background: Increasingly, patient-reported outcome measures (PROMs) are used to monitor chronic kidney disease (CKD) symptoms in routine clinical practice. However, such symptom measurement currently requires completion of multiple, often lengthy, PROMs, which may lead to questionnaire fatigue, lower levels of completion, and missing data. Moreover, many CKD-specific PROMs lack evidence of important measurement properties and few were developed using contemporary psychometric methods. The study objective was to develop and validate a short-form kidney symptom burden questionnaire (KSB-Q).

Methods: A cross-sectional item pool survey was distributed to adults (≥18 years) with CKD stages 3-5 [including individuals not receiving kidney replacement therapy (KRT), those receiving dialysis and those with a functioning kidney transplant] in England (Birmingham, London, Sheffield, and Nottingham) from March to September 2022. Rasch measurement was used to assess the psychometric properties of the item pool. Cognitive debriefing interviews were conducted to evaluate content validity.

Results: In total, 419/1464 participants responded (29% response rate), with 28% receiving dialysis and 30% in receipt of a kidney transplant. Rasch analysis indicated that nine items, one for each of nine symptom domains (fatigue, pain, memory/concentration, poor sleep, skin problems, gastrointestinal problems, dizziness, restless legs, and shortness of breath), formed a PROM with strong psychometric properties (including statistically acceptable reliability, test-retest reliability, and validity). Cognitive debriefing and survey responses confirmed content validity encompassing relevance, comprehensiveness, and clarity.

Conclusions: The KSB-Q is a nine-item PROM measuring somatic symptoms. The KSB-Q demonstrates strong psychometric properties in patients with CKD stages 3-5, including those not receiving KRT, individuals receiving dialysis, and those with a functioning kidney transplant.

Keywords: Rasch analysis; chronic kidney disease; measurement properties; patient-reported outcomes.